Doctors Need to Make Peace With Dr. Google

“Would you mind humoring me for a minute?” I asked the doctor, a maxillofacial surgeon I’d met 30 minutes earlier.

He’d already taken X-rays of my head and palpated the tender, knotty mass inside my swollen cheek. It was a nonspecific muscular strain — not an everyday injury, he conceded, but not a reason to get my affairs in order either. What a relief, I said, before asking if I could still run through some of the conditions I’d come across online.

With the doctor’s blessing, I went down the list: salivary stones, Sjogren’s syndrome, buccal cancer, your garden-variety gland blockages. He nodded along, explaining why each one didn’t quite match my symptoms. He also taught me the correct usage of the word “buccal.” This Q & A session took about five minutes, and it probably spared me from the anxiety of shining an iPhone light inside my mouth, wondering if the doctor had considered buccal cancer and rereading the Wikipedia entry on the parotid gland.

In other words, go ahead and see Dr. Google. Just get a second opinion afterwards.

Here’s the thing: I’m always going to Google symptoms before I see a doctor. I’m always going to do a quick sweep of the medical literature. I’m always going to read up on the parotid gland. And I’m in good company; studies suggest that most of us hit the internet with questions about our bodies, even if we’re planning to see a doctor. Experts regularly take issue with this approach, arguing that Dr. Google can diminish trust in actual doctors and cause patients needless health paranoia, potentially taking a toll on mental health and contributing to healthcare avoidance. Butthere’s nothing inherently harmful about the activity, and research indicates that online info-seeking can actually improve healthcare experiences if patients discuss their findings during appointments.

In other words, go ahead and see Dr. Google. Just get a second opinion afterwards.

In one 2017 review paper, published in the Journal of Medical Internet Research, informatics researchers from Singapore analyzed 18 different studies on seeking health info online and its impact on the doctor-patient relationship. Most patients admitted to pre-appointment internet time, and they were more likely to say it heightened, rather than hindered, their exam-room interactions: Some said it helped them understand clinical jargon used by doctors; others reported feeling better equipped for conversations regarding their care, as well as more confident and comfortable with their doctors’ advice. Patients who reported the best healthcare experiences and strongest doctor-patient relationships were those who discussed their online findings during appointments — with doctors receptive to having those discussions.

“I think you can be sick without a diagnosis, and that doesn’t make your sickness any less valid.”

My recent cheek-mass scare was the first time I made a conscious decision to lay bare the fruits of my googling during an appointment. The decision paid off: My doctor’s response told me that he was a human being who knew way too much about head-and-neck anatomy. What more could I have asked for?

That’s just one anecdote, though. For certain patients or types of medical problems, it might not be a great idea to dabble in casual self-diagnosis, even if you loop in your doctor. Plenty of studies say that health anxiety and cyberchondria, a digital-age analog to hypochondria, are serious, growing problems, and that people prone to either condition should scale back on googling symptoms — or just quit altogether and get some therapy. And I was fortunate to have a positive experience talking about my online research with a doctor; that’s not the case for everyone. But things could be trending better for patients.

The growing patient-centered care movement rejects old-school medical paternalism and invites patients to become active participants in their care — paper gowns and white coats as teammates. Still, research suggests that patients are often wary of asserting themselves in the diagnostic process as teammates would. In the Singaporean paper, the most commonly cited reason for patients staying mum about online research had to do with fear of doctors reacting badly, as well as perceived discouragement from doctors. Patients who felt discouraged weren’t planning to hide their internet searches, but they clammed up when doctors acted dismissively, seemed irritated or made efforts to avoid the issue. Study authors generally found the implications of bringing up health information to be more positive than negative. But when attempts to talk about Dr. Google didn’t go well, it mattered a lot to patients. They felt anxious and angry, and unhappy with their care and their relationships with doctors.

Annemarie Jutel, a medical sociologist in New Zealand whose work focuses on “all social phenomena related to diagnosis,” has a theory about why doctors want patients to ditch Dr. Google (or at least feel enough shame to pretend to). To her, it speaks to medicine’s overreliance on diagnosis. “I think you can be sick without a diagnosis, and that doesn’t make your sickness any less valid,” says Jutel, who also has a background in nursing. “A disease is a material phenomenon which exists, but the diagnosis we give to the phenomenon is a social agreement about what counts as disease.”

It might sound strange to think that doctors lean too hard on diagnosis. But the use of a rational, scientific system to explain disease wasn’t always a defining part of a doctor’s job or identity, Jutel explains. In the late 19th and early 20th centuries, doctors fought to establish the value of diagnosis in two ways: as an indispensable clinical service and a signifier of legitimate expertise, i.e., a tool for separating doctors from both patients and uncredentialed quacks. Doctors won the fight; diagnosis became “simultaneously pivotal to the expansion of medicine’s reach and also to the cultivation of self-diagnosing patients,” Jutel says. “On the one hand, medicine asks patients to believe in diagnosis as an explanatory framework. On the other hand, doctors are dismayed that [patients] should use diagnosis to explain what ails them.”

A diagnosis can become the devil you know; a shared label to bond over; a word to set a Google alert for.

Back in those days, newspapers shouldered the blame for igniting unfounded illness fears and emboldening patients to disregard medical advice, much the same way Dr. Google earns disdain now. Of course, it’s true that the internet teems with dubious health information. (See: anti-vax Twitter, exaggerated study reporting, wellness blogs exhorting the evils of toxins.) Jutel acknowledges that “people need to be smarter about online junk, which is much of what Google proposes.” But rather than express irritation, she believes doctors should help patients make sense of the junk, and of their health: “It gives the doctor a good starting point for understanding the patient, even though there will be plenty to set straight because of the low quality of online material.”

When your symptoms are baffling and interfering with your life, a diagnosis from any source can be a tremendous relief. After years of waking up to raw, hivey rashes covering my face, testing positive for a severe fragrance allergy gave me a renewed sense of control over my body. When my right hand went from tingling to barely functioning, it felt like a win to learn that I had a defunct muscle compressing my carpal tunnel. Compared to unnamed symptoms, a diagnosis can become the devil you know; a shared label to bond over; a word to set a Google alert for.

Still, Jutel says it’s not always a diagnosis that patients need most. She isn’t calling to dispense with diagnosis entirely — she just wants doctors to make treating the patient, not the disease, their priority. “I have been involved in a study,” she says, “where we found that patients who were given an explanation, a plan and a treatment were usually satisfied. Most wanted that, whether it came from diagnosis or not.”

The maxillofacial surgeon acknowledged that he didn’t give me the formal diagnosis I probably expected. But it was OK. I didn’t feel like I needed a name for my unspecified cheek strain to take charge of the issue. I had a good idea of how to care for the mass, and enough of a reason to believe it wasn’t cancer. And if my cheek didn’t un-chipmunk, I knew I had my doctor — my teammate — on my side.

Theresa is a science and health reporter and the editor of The Paper Gown.

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Excellent article, Theresa! It was very interesting to read about the OTHER, more encouraging argument regarding “Dr. Google.” I agree that it can enhance your comprehension and communication during a doctor’s visit. However, it can also be a dark rabbit hole that is difficult to get out of.
You’re an amazing writer. Keep up the great work.

Dr. Google definitely has its place. A few years ago I was able to self-diagnose my appendicitis before it got bad. The doctors were surprised I even went to the doctor, because my pain was super minimal, and most people wouldn’t have gone at that point. Based on my searches, the symptoms (although not very painful) were the exact symptoms of an appendicitis. I figured I should have it taken care of before it got painful. I have to admit, even I was a little surprised when the doctor’s confirmed it was indeed appendicitis. They said it was really good I got it taken care of before it burst – as that can cause huge problems.

Yes of course we all consult Dr Google & Dr Youtube,it’s the age we live in and useful.
However if one is prone to hypochondria and thinks every symptom might be a fatal disorder then do
take what you read on Dr Goog. all with a grain of salt till the MD & tests tells you what they surmise is wrong with you.

I had an aortic stenosis – one which chewed up my red blood cells, leaving me anemic. My hematologist kept insisting it was a gastric bleed. I found that major institutions with specialties in various areas (such as Cleveland Clinic or Northwestern) have websites which help the patient better understand the conditions, the symptoms, the choices (such as TAVR vs. surgery), etc. And, in one case, even a PA who could help me distill down the questions I had. With this research in hand, I was able to go to a specialist closer to me and decide upon a course of treatment. Best of all, he was not offended or upset that I could ask intelligent questions as some of the other doctors I had seen were.

I SO agree with this article! Thank you for putting it into words all people can understand. I google my symptoms when it is something new, something I’ve not experienced before. (Being 60 means I’ve experienced a lot!) For example, my doctor recommended I see a rheumatologist while we were looking for answers for symptoms I was having. I went online and googled what a rheumatologist treats and self-diagnosed before I got there. The doctor’s diagnosis was what I found. A person has to be real about their symptoms and think about it though. There were so many conditions I found, but, except for the one pertinent to me, they all had at least one important symptom that I didn’t have. I always talk to my doctors about googling my symptoms, and if they don’t like it, I find another doctor.

Thank you for writing an article that covers both the patient aspect and the doctor one.

This is wonderful to see – I had a similar experience as the opening paragraph and it turned out it WAS one of the things I had googled and asked about after my doctor ran tests and ruled out all the common diagnoses! Coming in armed with my google findings, he was able to diagnose a very rare condition in one appointment. And it’s turned out to be a complicated one to treat, so now my doctors and I are all sharing our findings together and my searches led us to an expert in the field that’s helped guide us.

yes dr google has its place but if you have anxiety issues as I do Dr google is really not for you. You will think you have all sorts of things. Dr google has its place in that it can enhance your knowledge on the right questions to ask but it can never take the place of a diagnosis

A very wise sentence from this article: “In other words, go ahead and see Dr. Google. Just get a second opinion afterwards.” An informed patient is a powerful ally but unfortunately many use Dr. Google in place of a professional examination and treatment. Use Dr. Google to compliment, not replace a visit to your medical professional.

I completely agree that Dr. Google is a good first opinion. Both of the major health conditions I have wouldn’t have been diagnosed if I hadn’t consulted Dr. Google.

I have both Ehlers-Danlos Syndrome and Endometriosis. I found out about endometriosis while googling my symptoms after several failed tests for other culprits and my Dr. suggesting my chronic pelvic pain and frequent urination was anxiety… I did a ton of research from surgeons who are experts in the disease and found a surgeon who was able to give me some relief through excision surgery.

EDS was a different story. I had been struggling for years with more and more joint pain and laxity after an injury and subsequent atrophy. I happened upon EDS by hearing about it from a YouTuber I follow who is diagnosed with hypermobile type EDS. Her symptoms were so similar to what I had experienced the past few years so I did more research. I fit the diagnostic criteria (which had recently been released in hopes of more patients getting diagnosed by their PCPs instead of waiting months or years to see specialists) I brought in the Dx criteria to the first visit with a new doctor and got my clinical diagnosis that day.

During this process I also saw doctors that doubted my research, or dismissed it. I had a urogyn tell me I “probably had endometriosis” when I brought it up as a possibility before seeking out my surgeon. When I told her I was thinking about excision surgery because I had read about it online, she told me that google was dangerous and that birth control was the best treatment plan… She was wrong. As are many uninformed doctors about this disease.

There are too many doctors like that out there…. They dismiss not only the information presented but the patient’s intelligence and ability to discern scientific sources; as if they are “better than” or “smarter than” all of their patients. That attitude is so detrimental to not only the patient-doctor relationship but to the patient’s physical and mental health. It can prevent seeking a second opinion (so many patients hear “Trust your Doctor!!!”) and delay treatment for life threatening conditions. This is especially true with women’s health or pelvic pain such as I was experiencing. It’s an area where doctors as a whole seriously need to do better

I love this! A few months ago I had a nasty infected tonsil stone that landed me in the ER. The doctor was so perplexed by it he told me to wait a moment while he went and “asked Doctor Google” for some advice! Made me feel better about all of the times I have asked Doctor Google for help.

Read this next

For people with irritable bowel syndrome, it’s common to hear that symptoms such as cramping, alternating diarrhea and constipation, and bloating are “all in their head.” In the case of IBS, there’s actually some truth to this.

It’s not that their symptoms don’t exist. IBS is a very real disorder, and managing its physical toll often becomes an all-consuming effort. The litany of concerns that accompany so many activities — always scouting the closest bathroom, making sure you can reach it in time, farting in public — keeps many people with IBS from having a social life.

Yet according to some experts, IBS is not solely about what’s going on in the digestive system; rather, the brain exacerbates the condition. “IBS is a disorder of brain-gut dysregulation,” explains GI psychologist Sarah Kinsinger, who is also co-chair of the psychogastroenterology section of the Rome Foundation. Accordingly, addressing the “brain” side of IBS through cognitive behavioral therapy with a trained psychologist may help decrease both the anxiety that’s often associated with the disorder and its physical symptoms.

“CBT really should be the first-line treatment for people with IBS. It’s the treatment with by far the most empirical support, and when done well, it can be curative,” says Melissa Hunt, associate director of clinical training in the psychology department at the University of Pennsylvania.

In a series of trialspublished last year, researchers in the UK compared the standard treatment for IBS (typically diet and lifestyle modifications and/or medication) with eight sessions of CBT delivered over the phone or online. Before and after the trials, participants answered questionnaires designed to measure their anxiety, depression and ability to cope with their illness. Two years after the trials, 71 percent of the phone-CBT group and 63 percent of the online-CBT group reported clinically significant changes in their IBS symptoms. Meanwhile, less than half of the standard-treatment group reported such an improvement. Those who did CBT also exhibited lower levels of anxiety and depression and higher coping ability than other participants.

In an earlier meta-analysis (a study of studies), published in 2018 in the Journal of Gastrointestinal and Liver Diseases, a different team of researchers also found that CBT appeared to reduce both psychosocial distress and the severity of IBS symptoms, with a greater effect on the physical symptoms than on the mental ones.

Explainers

The brain-gut connection

How this happens is not completely clear at this point, but it’s believed to have something to do with how the gut and brain communicate.

“IBS is thought to be a disorder of centralized pain processing,” Hunt explains. “There is miscommunication between the pain centers in the brain and the nerves in the gut. In people with IBS, pain signaling gets inappropriately amplified.” Discomfort that wouldn’t even register in the majority of people feels like being stabbed in the gut to a person with IBS. “The best way to address that is to find ways to help reduce pain signaling, and that’s with a psychologist,” Hunt says.

CBT for IBS entails learning relaxation techniques, such as diaphragmatic breathing and progressive muscle relaxation, which help reduce the “volume” of the pain signals by activating the parasympathetic nervous system, i.e., the body’s “rest and digest” response. “This can also lead to increased blood flow and oxygen to the digestive system, which helps the GI tract to function in a more rhythmic way,” says Kinsinger, who is also an associate professor at Chicago’s Loyola University Medical Center.

CBT also involves thought restructuring. IBS can cause a cycle of worry: Worrying about symptoms leads to being hyperfocused on the slightest hint of any symptom, which increases anxiety, which aggravates symptoms. People with IBS also often catastrophize, meaning they assume the worst will happen (“If I have an accident at work, I’ll get fired and never get another job”), develop social anxiety and become withdrawn. CBT addresses these issues by shifting attention away from IBS symptoms and using exposure therapy to help people gradually engage in more activities outside their homes.

Additionally, using CBT, people with IBS learn to identify and change dysfunctional ways of thinking. For example, consider someone with school-aged children who asks their spouse to attend all school functions because they’re afraid of farting in a room with other parents, which would inevitably cause humiliation and might even make people think they’re disgusting A therapist might ask them how often they notice bodily noises from other people to help them realize that we’re a lot more cognizant of our own bodily functions than other people are. “In other words, we identify the catastrophic beliefs and then search for evidence supporting them or not,” Hunt says.

CBT is a skills-based, goal-oriented approach to treating mental disorders that emerged in the mid-20th century. All CBT programs share the same underlying goal of helping patients identify and modify negative or unhelpful thought patterns and behaviors. “It teaches patients techniques that they can then implement on their own.” says Kinsinger. “It can be done pretty efficiently, depending how motivated and receptive one is to learning these skills.” But over time, customized versions of CBT have been developed for specific conditions including insomnia, schizophrenia and IBS. Different versions of CBT use different techniques, such as role-playing, exposure therapy and relaxation exercises, and vary in length. On average, CBT for IBS lasts between 4 and 10 sessions in total.

Jeffrey Lackner, professor and chief of the division of behavioral medicine at the University at Buffalo, SUNY, says their program is structured like a course: “You learn a specific skill to manage your GI symptoms, process information differently or respond to stress in a less extreme way. Then you practice that skill in session before using it in the real world.” Often therapists also give patients homework to fine-tune the skills they learn. They come out of CBT with a toolbox of techniques to manage the day-to-day burden of IBS.

Some people with IBS do CBT on their own, using self-help books, online materials or apps without ever seeing a therapist. “Not many psychologists are trained to treat GI disorders specifically, so physicians don’t often have anyone to refer patients to,” Kinsinger says. The Rome Foundation trains psychologists and maintains a directory of gastrointestinal psychologists, but if someone can’t find a provider in their area, Hunt and Kinsinger recommend looking for a psychologist who’s trained in CBT and has experience treating chronic pain, panic disorders or anxiety.

Reducing sensations vs. reducing sensitivity

Not everyone is fully on board with CBT for IBS. One 2018 review study found “insufficient evidence to demonstrate the effectiveness of online CBT to manage mental and physical outcomes in gastrointestinal diseases” including IBS. A different 2018 review concluded that although psychological treatments for IBS appear to help in clinical trials, it’s unclear if they work in other settings and which treatments — such as CBT, mindfulness-based stress reduction and guided affective imagery — are most effective.

IBS is a complex problem, and some doctors prefer to integrate CBT with other treatments. But “by the time we see them,” Lackner says, “many of our patients have found that the medical treatments have not provided adequate symptom relief.”

Some IBS patients also find thetraditional approaches too hard to stick with. The most commonly prescribed treatment is a “low-FODMAP” diet, which requires giving up all dairy and legumes, plus many grains, fruits and vegetables. “Some trials show that even if the diet reduces or eliminates GI symptoms, it doesn’t improve quality of life because it’s crazy restrictive,” Lackner points out.

“With IBS, the nerve endings in the gut have become hypersensitized, and the brain magnifies those signals in the gut,” Hunt says. “The low-FODMAP diet tries to reduce the sensations, whereas CBT reduces the hypersensitivity. When you turn down the volume on the sensations, then you can eat whatever you want.”

Whether CBT helps with this brain-gut dysregulation, addresses distorted thinking and anxiety, or increases confidence in a person’s ability to manage gastrointestinal symptoms — or all of the above — it’s helped people with IBS resume parts of their life they’d put on hold.

Brittany Risher is a writer, editor and digital strategist specializing in health and lifestyle content. She's written for publications including Men's Health, Women's Health, Self and Yoga Journal.

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